Only in relatively recent times has our western society viewed death as a somewhat mystical and taboo experience.
It wasn’t all that long ago that our loved ones had to be cared for in their own home in the lead up to their passing. After the awaited final breath was taken, family and community would gather in the home and support each other. Death was embraced as an expected and unavoidable part of our life cycle. Death wasn’t ‘hidden’ and something that we feared discussing.
Today, life is different. With the quantum advances of modern medicine, we are a society with an ever increasing life expectancy. We live in a culture where we speak of an ‘unexpected death’ of an 80 + year old, and where many of us would rather talk about anything other than the end of life.
When I received my cancer diagnosis, I was forced to contemplate an early mortality. Thinking about leaving behind my two young boys, my husband needing to be a sole carer and widowed before his 40th birthday, was unbearable. Up until that moment I hadn’t thought much about my own death. Death was something that happens ‘after your 80’s’ right? I didn’t have my affairs in order, I didn’t have a will and I hadn’t discussed what my funeral might look like. By not having a plan in place I was leaving all of this responsibility to my family, should the unthinkable occur.
In the flurry of making plans for my surgery and post-cancer care recovery, I didn’t have the emotional capacity to discuss the possibility of death in any great detail. Funny isn’t it? The time that I should be talking about death – I just couldn’t. It was far too distressing to contemplate. My energy had to be spent on my recovery – not considering the intolerable alternative. My only instruction to my husband was to take the children back to South Africa if I died, so that he would have family support to grieve and care for our boys.
My first experience was when I collapsed overnight at home. I managed to crawl to bed and I told my husband to phone an ambulance. I was lying on my back and I could feel the blood draining from my face. I was petrified. I remember thinking to myself, “ I cannot die like this”.
Being a nurse and travelling the cancer road has many advantages, but also comes with challenges. As I waited for the ambulance to arrive, I was picturing my own resuscitation. I wondered how many minijets of adrenaline the ambulance crew had in their bag and if there would be enough. I thought about instructing them to use my best vein, because I am difficult to cannulate. I wondered how far away another ambulance crew may be, in case the first crew needed back-up. Having attended quite a few community resuscitations myself, I knew that the more expert hands available the better.
I can still hear my husband saying to the 000 operator “she’s very pale” and me saying, “just tell them to come quickly”. Thankfully, the fantastic ambulance officer was a pro at cannulation and I did not need those minijets of adrenaline!
The next time I considered my death again, was on the way to hospital. Anyone else see the theme? This time it was less exciting and there were no lights and sirens. I was having a drug reaction which was affecting my heart and I was at risk of having a seizure.
On the way to the hospital I was thinking about what songs I would choose to have at my funeral. I decided that my wedding songs were a good choice – a nice mix of Jack Johnson, Pete Murray, John Butler Trio. Perfect! I wondered if I should have a wooden coffin so that the boys could draw pictures on the outside. But I found that image far too morbid for those who were there to say their final goodbyes. I decided a nice eco-friendly coffin would do nicely. Probably more cost-effective too! Win-win.
Before I became unwell I just hadn’t seen it as a priority and I didn’t have a will. Interestingly, after my diagnosis, none of the health professionals involved in my care had mentioned to me that I should think about advanced care planning. I think that is probably because I wasn’t ‘imminently’ approaching death and possibly because our health care teams are tasked to cure their patients. End of life discussions are usually reserved for patients rapidly approaching, or in their palliative phase.
My experience of being a member of the cancer community is that we also don’t tend to discuss end-of-life care planning, unless a short life expectancy has been declared. Why do we wait for an emergency or terminal diagnosis? Is there a better way?
Here are some important Australian stats for us to mull over as a society.
- Over 70% of Australians want to die at home, but only 14% actually do.
- 75% of people have not discussed end of life with their families
- 45% of Australians die without even having a will in place!
- 92% of deaths are expected. Yet despite the knowledge of what’s coming, only 28% have actually had this most important conversation with loved ones.
Clearly this is important. The reality is that all of us will die. Shouldn’t we have some say in how and where we want to die, and what happens to us after we die? Don’t we also have an individual responsibility to make those plans, so that our families don’t have to whilst they are grieving?
So! I want to share another perspective on end of life planning.
I have invited my friend Wendy Kinton, an end-of-life care researcher (and one of the smartest humans I know), to share some very clever insights into end of life planning. I’m sure that you will find Wendy’s insights incredibly thought provoking and I hope that you feel inspired to have probably the most important conversation that you need to have.
The most important conversation you’ll ever have – by Wendy Kinton
“In the nocturnal moments I had as a new parent I developed a curiosity in Say Yes to the Dress. You know the one. Mother, grandmother, best friend and brutally honest cousin gather on the boutique’s lounge in celebration of the bride’s happy future. Champagne is sipped, the frou frou is critiqued, and different opinions are expressed while they await the ultimate sign of the perfect wedding dress: the tears. The contrast between those scenes and the screaming insomniac infant in the background could not have been starker.
Baby gender reveal parties, commitment ceremonies, divorce parties and tattoos have given us the freedom to mark the big events in our lives. We gather our support team, bring food and wine and build our communities. But we don’t talk much about the final step in our lives.
Why don’t we plan for the end of our lives? It’s one of society’s last taboos. None of us want to think about the party continuing into the wee hours once we have left. We don’t want to feel uncomfortable, anticipate loss and sit with grief and sadness. For those who have been unwell, it can be particularly uncomfortable and interpreted as a sign of giving up hope or not fighting hard enough to conquer the disease.
Staring my own mortality in the face, I sat down to write dot points for a new Power of Attorney document. And I froze. There was no gathering of my team, and definitely no champagne. I struggled to find the right words and worried about messing up the form. It was confronting and confusing.
Because death is so far in the future, we find it hard to think about. We can’t hold it and feel it like a bolt of silk and a bejewelled sash that when tied around the bride’s waist brings the whole outfit together. It’s an abstract concept; one that is always too early to talk about – until it’s not.
If I became very unwell, who would speak for me? Would they know what to say? Would they, under enormous pressure, be up to the job?
Advance Care Planning is the process of thinking about what is important to you, particularly about your future health and care needs, discussing it with others, and writing it down in an Advance Directive. Each Australian state and territory has a different legal form, and Advance Care Planning Australia has brought the links to them all together on their website. There’s research evidence that documents outlining your wishes for your loved ones to enact can reduce bereavement risk in those you leave behind. They can move forward knowing they made the right decisions for you. It’s the ultimate gift of love for your nearest and dearest who, one day, may need to make decisions for you in a crisis.
So, I challenge you to this: gather your team. Hold a Power of Attorney or Advance Directive party. Bring food, crack open the gin and get talking. Here’s a time you can legitimately talk about yourself. What’s important to you? What’s not? Who would you trust with your children if you couldn’t look after them? Who would you trust to manage your finances if you couldn’t?
The ink has now dried on my Power of Attorney form, and it’s in the post for my trusted siblings to consider and sign. In the end, I boiled it down to any other administrative process. I pay my car insurance, vote, and complete my Advance Care Planning documents. Job done.
So, take fear by the hand, sit it across from you, stare it down and give it a good hard talking to. Write down your wishes, then get back to the business of living life to the fullest”.
Wendy Kinton is an end of life researcher, speech pathologist in a past life, and mum to two amazing young men.
The Awakened Mumma & Wendy Kinton
So, I encourage you to please take a moment to absorb the statistics that I have outlined above, embrace a new way of thinking about planning the end of your life, complete your will, and take Wendy’s advice and explore your own Advance Care Planning.
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X The Awakened Mumma, Author of ‘A Woman’s Guide to Navigating the Invisible Cancer Load‘